There are two Design Notes in the final ConOp:
"Design notes: Advance care directives allow individuals to make choices about future medical treatment in the event they are cognitively impaired or otherwise unable to make their preferences known. The consequences of acting on an individual’s preferences, as set out in an advance care directive can be significant, sometimes final. At this stage, the directive itself will not be uploaded on the basis that, if uploaded, it would raise issues of currency or contain legal implications that are outside the scope of the current work. Future work will look at including the directive itself (see Section 2.8)."
From a system design perspective, this is not a major issue. It's just a document.
Whichever way it is resolved, the system won't change much.
However, the second one is much more fundamental.
"Design Notes: Limiting access to clinical documents is challenging.
A number of the controls described above aim to accommodate the need for all individuals to set some basic controls around their PCEHR. It is recognised however that some individuals may wish add information to their PCEHR over which they wish to apply tighter access restrictions (and closer management). It is also recognised that concerns have been raised by healthcare providers about the utility and potential impacts of this feature.
However, failure to include this feature may result in some individuals changing their behaviour (e.g. withdrawing participation, refusing to grant access, withholding information, etc.) to work around the absence of this feature. Therefore in line with the central concept of a personally controlled EHR, ‘limited access’ has been included as an advanced feature.
The inclusion of this feature means that improving health literacy will become more essential and individuals need to be educated about the consequences of limiting access. As a result, the individual is required to assert they have reviewed the educational material around access controls before using the more advanced controls.
Implementation of the limited access feature has also been acknowledged as challenging. The proposed approach does not require the source system to support the feature and limits the ability to change the status of a clinical document to being accessible only via the consumer portal. The design trade off means that only individuals who are able to use the portal and have set up a PACC/PACCX will be able to access this feature.
With regard to visibility of ‘limited access’ information, users will not be aware of its presence if they do not have access to it. This decision was made so that the individual is not pressured into revealing the limited access information."
This one is far more serious. The PCEHR is designed to facilitate access to a patient's health information. It is intended to improve the delivery of health care, however, concentrating health information and improving access to it is likely to have the unintended consequence of exposing that same health information in ways that are unacceptable to many citizens. There is a conflict of interest here. That between trusted, practicing medical professionals need full access to as much information as possible on the one hand, and citizens, who don’t want un-necessary access to their private data on the other. There is also a range of access needs in between that required by the trusted, practicing medical professionals and that of no un-necessary access. The solution that NEHTA has come up with – an advanced feature called “limited access” - is a half-baked idea that will not address the problem and will, IMHO, alienate many citizens. Limited access does not deliver a range of access controls, it can only be set up by savvy net users and it is a significant change to the data architectures in the products contained in the NIP’s solution.
Changing a data architecture is not a simple exercise. It’s like moving a house three metres to the left, once it has been built.
Referring to it as a Design Note, is also most inappropriate. It's a part of the problem and needs to be addressed as such, not as a solution option.
Managing Health Information is a very difficult, social problem. I don’t think it has yet been solved. And it won’t be solved by technologists.
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David
8 comments:
funny to hear you say "it is a significant change to the data architectures in the products contained in the NIP’s solution" after whining about how choosing the NIP from Singapore will mean that it's going to be all Singapore.
So let me get this straight. I present unconscious at A and E, with no relatives present. The PCEHR says an advanced care directive exists, but no one can access it? Surely this is just as legally confounding as the alternative? What does the clinician do now? Does the existence of a directive suggest that no extreme measures are to be taken (without knowing the limits of care requested)? Do we ignore it and carry on saving the life as we can't read it, potentially against the will of the patient? Ask any clinician if they think that not uploading the directive is a good idea. Surely it was for exactly this scenario that the PCEHR was touted to be of value?
This is getting to be even more of a medico legal nightmare!
Having read through the latest ConOps there are no inherent efficiency gains, increasing complexity, probable lack of reliability, and no understanding of the complex competitive forces within the health delivery industry.
A recipe for disaster and a total waste of money .........
What seems to have happened with the advanced care directives is that a choice has been made that minimises government risk but increases clinician risk. If there is a directive downloadable, then the lawyers worry that the government is liable. If there is no directive accessible on the PCEHR, it appears to be caveat clinician. So, has government elected to minimise its own risk at the expense of increased clinician risk? Interesting question.
There's also a question of time, and how long it would take the stakeholders to come to consensus about the contents of an advanced care directive. It's planned for a future version
So why allow for a pointer in the system to the existence of a directive that is not yet in existence. If a patient does not consent to a psychiatric record being available in the PCEHR we do not keep a pointer to it visible, as the pointer itself contains information.
Anonymous#2 - consider this current real-world scenario:
"I present unconscious at A and E, with no relatives present. A friend says an advanced care directive exists, but no one can access it?"
What does the clinician do (i.e., policy, legal obligation, etc).
Now, how is this different to the PCEHR scenario you outline?
"Anonymous#2 - consider this current real-world scenario:
"I present unconscious at A and E, with no relatives present. A friend says an advanced care directive exists, but no one can access it?"
What does the clinician do (i.e., policy, legal obligation, etc).
Now, how is this different to the PCEHR scenario you outline?"
That's one for the courts I'm sure. But it comes down to the systematisation of an event that was previously unlikley into one that might become commonplace. One obvious difference is thus that the first case ( a relative makes a remark) is not open to a class action unlike the PCEHR. Nor is it a professional data source. Courts might distinguish the competence of individuals, and professionals are treated to a different standard than non professionals. Why open such a can of worms?
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